Side Effects, Second Opinions, and Support #nomorebeer #su2c #gofundme #mealtrain

Today, I went up to Johns Hopkins University Hospital for a second opinion. My sister-in-law, Atitaya, works with Stand Up 2 Cancer, a non-profit organization that helps to raise funds for cancer research. They work with several cancer research institutions across the country and recommended we visit Johns Hopkins for their work in lung cancer. After talking to the doctor for almost an hour, I left the hospital feeling pretty good. She recommended the same primary treatment as the doctors at UVA and seemed optimistic that the Alectinib was going to work. For now, it seems like we’ll stay the course, but she is also helping to get me plugged in with doctors in Boston who are doing targeted research on ALK mutated lung cancer as well as lung cancer in young non-smokers. This will be beneficial when we need to start thinking about secondary treatment options.

I’ve been on Alectinib for a few weeks now and so far, the side effects have been pretty minimal. The most noticeable side effect has been altered taste; citrus fruits taste bitter to me. We’re also monitoring my liver enzymes because this medication has been known to cause elevated liver toxicity. This means that I have to limit my alcohol intake so my liver doesn’t have to work too hard. I guess I gotta lay off the the craft beer. So far, my blood work shows slight elevation, but the doctors say that it can be a transient side effect that could go away after a few weeks. If these are the worst side effects, I’ll take it. Overall, life is starting to get back to normal, but we’ll have a better idea of what the new normal will be after my next scan in March.

I’d like to also take a moment to express my appreciation for the overwhelming support  we have received over the past few months.  My residency family organized a meal train during the month of January so that Varisara and I did not have to worry about cooking and could focus on recovery and taking care of Avery. This was a huge help when Varisara started going back to work. In addition, a couple of former VCU OMFS residents, Samir Singh and George Soung, started a GoFundMe page to help with expenses that we have incurred since my diagnosis. The fundraiser met the goal in less than 2 days and is continuing to grow! This was completely unexpected and we are taken aback by the outpouring of love and support.  Thank you to everyone who has contributed and reached out! I continue to be amazed and humbled by the number of people who care.